BMT Day +2

Today's daily picture is brought to you by Ariauna's little brother Jaxon. We love and miss you little Jack Jack!

WBC- <0.1
Hemoglobin- 9.5
Platelets- 10 (replacement today)
ANC- not available right now
Weight this morning- 51.04

Ariauna slept really well again last night. Shortly after we woke up the doctors came to do the rounds. Today our doctor, Margaret McMillan came on as the in-house doctor and will be on now for 2 weeks. We really liked Dr. Wes Miller too, but I am so glad to have our own doctor on during these most difficult days. The doctors take turns doing 2 weeks at a time. They all do Bone Marrow Transplants, but each has their own specialty. (They all know plenty about the other diseases, and if there was a problem they would contact the doctor with that specialty). But I was grateful to know we will have a Fanconi Anemia specialist on for the next few weeks.They went over all of Ariauna's labs and stats and the only big thing for today was that they will be doing a platelet replacement transfusion later today because she is as low as they will let her get during transplant. As soon as they got done talking to me in the hall, Dr. McMillan came in and saw Ariauna and said she was giving her an A++++ for how good she is doing and how tough she is being. She is one tough girl. Ariauna's day started out as a pink day (just okay) as she was not feeling very well this morning. She spent the morning pretty sick to her stomach. The hard part is we don't know if it is a pain feeling or a sick feeling. She just knows it hurts. Our nurse today got us some chocolate syrup ordered up to see if that would help her with taking her Sirolimus. We tried it and she did pretty good. They figure if they can keep it in for 30 minutes it has absorbed enough into their system that they do not have to take it again. She was able to keep it down that long. She spent all morning complaining about her tummy. They gave her several nausea medicines, one at a time but they didn't seem to work real well. She did end up throwing up a little later. Poor girl. I feel so bad for her. Her tummy hurts and then we have to stick more medicine in there. Unfortunately there are two that can not be given by IV. Ugh! After she threw up she did feel a little bit better and her mood light quickly changed to a rainbow. We got her up and she even wanted to get dressed. I even got her to do her physical therapy exercises. She had just climbed back in to bed when our nurse came in with a fun package. It was from the Whitings and our little Sadie. Sadie had a play date last week at the Whiting's and Sheri helped them make Ariauna a bunch of hugs. There was a really cute note from them that said, since they couldn't be here to give us a hug, they made them for us, so we could put them around us whenever we need a hug. They were so cute and it put a smile on Ariauna's face. There was hands all different sizes and included hands from Sheri, Meshell, Ashlyn, Shaylee, Amy and our Sadie. Ashlyn had also made Ari a really cute picture.

 Amy the Child Life Specialist came by to see if Ariauna wanted to help her with a game for the game show on t.v. today at 1:00. Ariauna helped her put together a True or False about pigs because Ariauna does love pigs. Ariauna really did not want to order breakfast or lunch. But I did finally convince her to try a Popsicle. She did only eat about 1/2 of one, but I am sure it felt good on her mouth and her throat.

We had a volunteer come by this morning to play with Ariauna as part of the research study they are doing. They ended up playing a game of Rummikub, but they didn't make it through the whole game because Ariauna was not feeling so good. The hospital was doing a BBQ lunch outside today and so I decided to go out and get a hamburger for lunch and brought it back up to the room to eat. Ariauna decided she wanted a roll with some butter so we ordered it up for her but she only ended up eating maybe 1/4 of it. Ariauna took a short cat nap before the weekly Game Show came on T.V. at 1:00. They have the game show every week on Thursday's for a 1/2 hour where they play some games on T.V. and bingo is always one of them. This is the 1st time Ariauna has played because last week it was cancelled for some reason. Anyway, Ariauna had a blast and it was amazing. They did an excellent job. I would have to say the game show on t.v. here was much better than the one at Primary Children's hospital at home. Here is Ari all set up with her bingo card and her phone right there where she can call in her answers for the other games.

I guess they switch the games around a little bit each week. But today they played guess that board game and they would show it on the screen and it would start really fuzzy and slowly come in to focus, if you knew the answer you called it in on your phone. They also played the true or false game about pigs that Ari helped put together. Another game they did was guess that animal sound and then last today was animal bingo. Ariauna had a blast. After the games, the parent walks down to the front desk and picks a prize for their child. I ended up picking Ari a Hannah Montana DVD game to play on the T.V.  Shortly after the game show Mrs. Harward from our school at home face timed us to show Ariauna her new class mates and to listen to Mr. Zito read the monkey in my chair book to the class. As they went around the class, there was monkey in my chair sitting right in Ariauna's chair. It was fun to see. We did have some problems with the Wifi and were not able to see the whole thing, so Mr. Harward actually video taped it and sent it to Ariauna. She even went around the whole room and had each of the kids say Hi to Ari and wave at her. It was fun to see the kids that are in her class. It was so nice of them to do that for Ari and she has watched the video's several times already.

Ariauna ended up taking about an 1 1/2 nap and so I worked on filing out her paperwork to start school here in MN. They will actually start having a tutor come in to her room here at the hospital starting right after labor day (that is when school starts over here) and once we get back to the Ronald McDonald House the tutor will come there. Later in the evening she was able to skype with Aunt Angela and her girls and her friend Maeghan and her family. She enjoys doing that, but I can tell she is getting more and more worn down. Later this evening they brought in her Tylenol and Benadryl to treat her before giving her the platelet replacement. Shortly after they brought in the platelets and got them all hooked up to run.

She was exhausted after such a busy day so our evening was pretty quiet. She watched her favorite Disney shows and we went to bed.  

Here is a close up picture of the BMT sign the nurses gave her on her BMT birthday and it now hangs on her door so everyone that walks by knows she has had her BMT.